Last week was a busy and interesting week with many meetings on Parliament Hill.
On Monday morning I met with a representative in the Prime Minister’s Office to discuss the promise in the October 2013 Speech from the Throne to end genetic discrimination by employers and insurers based on genetic test information. It is the intent of the federal government to table legislation that will address ending genetic discrimination. It is an election year and time is very tight. We remain hopeful that this will happen.
HSC is a member of Neurological Health Charities Canada (NHCC) and I, as part of this 24 member coalition, participated in meetings with Senators and MPs Monday afternoon and Tuesday to advocate for the following:
- Support for caregivers
- Make it easier for caregivers and individuals with brain conditions to continue working
- Deliver the right care, from the right providers, at the right time, in the right place
- Accelerate and coordinate brain research
The above suggestions are all evidence based recommendations derived from the National Population Health Study of Neurological Conditions, which was supported by the federal government in partnership with NHCC. This groundbreaking study is the most comprehensive study of brain conditions in Canada to date.
On Friday I presented at the CIAJ, Medical Genetics, Law and Ethics meeting, to share information on genetic discrimination with Justices, researchers and policy experts from across Canada.
This week I am back in Ottawa to participate in a roundtable discussion hosted by the Canadian Institutes of Health Research (CIHR) focusing on “Approaches to Prepare Patients to Engage in Patient-Oriented Health Research.” I am pleased that HSC is participating in this invitation only meeting.
I will also be meeting with the opposition leader Tom Mulcair to discuss support for caregivers and the value of health research. A few members of the Health Charities Coalition of Canada will be in the meeting.
Spring is a very busy time and for me a time of renewal and change. We continue to lobby on behalf of our HD community to encourage change that will help our families.
Thank for your continued belief that we are making a difference.
CEO Huntington Society of Canada
Chair of the Canadian Coalition for Genetic Fairness
Please continue to write your Member of Parliament to let our legislators and decision makers know that genetic fairness is important to all Canadians. Find your MP here: http://www.parl.gc.ca/Parliamentarians/en/members/addresses